Help me live

Help Me Live: 20 things people with cancer want you to know is a must read for anyone who seriously wants to support people with cancer. This book is a treasure chest. Lori Hope understood! She surveyed hundreds of people with cancer, read widely on the topic, spoken with doctors, patients, carers and therapists. Most significantly, she battled with cancer herself. The book is chocked full of wisdom, insights, anecdotes, humour and pathos. It shares the actual stories of so many who have personal experience in these areas. It’s an excellent resource. I’ve read it and I’ll be recommending it widely.

So if you’re an oncologist or work in oncology, then please get yourself a copy and read it! If your husband, wife, child, parent, relative, friend, neighbour, or colleague have cancer – and you want to support them – then please heed the wisdom in this book. If you know people with cancer, but you’re scared of saying or doing the wrong thing, then this book will equip you to help. If you’re the pastor of a church, a medical social worker, a general practitioner, a nurse, or simply want to better understand others, then this will open your mind to the needs of many. If you have cancer yourself, and want to feel supported and loved and understood, then I recommend reading this book and passing it around.

Many of the books I’ve read have been written from a specifically Christian perspective. This one isn’t, but it shows an empathy for people with a range of beliefs and doesn’t discount faith in God or the significance of prayer.

I’ve read Help Me Live through once and I anticipate dipping into it again and again in days to come. Some of the issues it raises are worth exploring more thoroughly and I’ve begun compiling a ‘further reading’ file to explore at some point. At a recent ‘Lung Cancer and Mesothelioma Support Group’ meeting I mentioned this resource and none of the medical staff, cancer support staff, carers or patients were aware of it’s existence. But then neither did I until the author wrote to me a few weeks back. So let me give you the gist of it with a few quotes and snippets from the book.

The 20 things people with cancer want you to know

1. It’s okay to say or do the ‘wrong’ thing.

“Doing nothing or holding back is worse to me than doing too much or saying the wrong thing.” (p20)

Six words in sequence that never fail: “I don’t know what to say.” (p18)

2. I need to know you’re here for me, but if you can’t be, you can still show you care.

“I know that my being sick scares you. It scares me, too. Don’t stay away from me because of this. We don’t have to talk about it. Just be here for me.” (p25)

3. I like to hear success stories, not horror stories.

“They spent the entire afternoon telling me about everyone they had known that had cancer, and telling me the details about how many of them had passed away. It made me feel terrified.” (p32)

4. I’m terrified and need to know you’ll forgive me if I snap at you or bite your head off.

“I just need them to understand that I was not at my best mentally and emotionally and to be patient with me.” (p42)

5. I need you to listen to me and let me cry.

“Sometimes someone would ask me how I was and when we started talking cancer, they changed the subject. That made me feel terrible.” (p50)

6. Asking my permission can spare me pain.

“I liked it when people would call and make an appointment to come over and see me and call an hour before to check that I was up for it.” (p62)

7. I need to laugh – or just forget about cancer for a while!

“I just needed someone to help take my mind off all the stuff going on. I didn’t want to think about the cancer. So just do things like watch a movie or go for a walk and just talk to them and treat them like you would if they didn’t have cancer.” (p69)

8. I need to feel hope, but telling me to think positively can make me feel worse.

“He kept encouraging me to deny chemo, that it was poison. It didn’t help me at all. My choice wasn’t respected, and I was left with a sinking suspicion that I may be choosing to poison myself.” (p92)

10. I want you to give me an opening to talk about cancer and then take my lead.

“I just wanted it to be normal. My friend came and we played Scrabble and talked, and it helped. Sometimes we talked about cancer. Sometimes we did not. But we played Scrabble just as we had most of our friendship.” (p99)

11. I want compassion, not pity.

“Many words of heartfelt compassion without being condescending were said. ‘I love you’ meant a lot to hear, or ‘You mean so much to me’.” (p105)

12. Advice may not be what I need, and it may hurt more than help. Try comforting me instead.

“I don’t like it when anyone starts a sentence with ‘you have to’.” (p111)

13. I am still me; treat me kindly, not differently.

“People don’t change when they get cancer and suddenly stop wanting to be called smart, sexy, fun, funny, a good Christian, an excellent cook, singer, etc. or a total fashionista. People are more than their cancer.” (p118)

14. If you really want to help me, be specific about your offer, or just help without asking.

“Instead of asking can I do anything, just do something, don’t wait for me or my caregiver to ask, because we more than likely won’t.” (p123)

15. I love being held in your thoughts or prayers.

“A friend told me I was wrapped in her love and prayers. I’ve never forgotten those words, and years later when I had a health scare, I thanked her again and told her how much those words meant to me.” (p128)

16. Hearing platitudes or what’s good about cancer can minimize my feelings.

“Beginning a sentence with ‘At least…’, at best minimizes and at worst totally dismisses a concern or worry.” (p135)

“A few people act as if you might be contagious or had done something to deserve the disease. Now that really hurt, I suppose because of the little nagging voice inside that’s saying the same thing.” (p139)

18. Don’t take it personally if I don’t return your call or want to see you.

“I wanted people to understand that I was tired and couldn’t return all calls or emails.” (p146)

19. I need you to offer support to my caregiver, because that helps me, too.

“When friends called and said they were bringing meals over and asked whether Thursday or Friday would be best, I could cry. Not only was it a show of their love and support but also it relieved my wife of yet something else to deal with.” (p152)

20. I don’t know if I’m cured, and bringing up my health can bring me down.

“On the ‘Are you cured now?’ issue, every time they ask it, it drives home the point deep inside of you that you will never know.” (p162)

And a bonus, from the revised and expanded edition…

21. I am more grateful than I can say for your care, compassion, and support.

“Friends and school families came and took care of us. Took my daughter to school and sports. Set a website for meals and rides. Kept my dogs when I was in hospital. Kept my kid when I was in hospital! They saved my life, and I will be forever grateful.” (p166)

On that note, let me say again that I am so thankful to God and to so many for their prayers, love, encouragement, and practical support. I need you to help me live, too!

10 thoughts on “Help me live”

A lot of the points apply or are easily adapted to carers too! I love 7, 13 and 14.
One of the nicest things a friend did for me once was ring me up and say ‘I’m coming to clean your bathroom’. I still feel teary when I think about it.
The other great book I read, which is probably only for those who have a bit of a black sense of humour is ‘The Selfish Pig’s Guide to Caring’ by Hugh Marriott.http://booko.com.au/9780749929862/The-Selfish-Pig-s-Guide-to-Caring

I am so sorry to hear of Lori’s passing. I love this list. Absolute truth. I feel that all of our friends have abandoned us, other than our children’s families. One old friend actually recently sent an e-mail saying that we all needed to get together and go out to dinner. We have not gone “out” in the past 13 months, and for someone who was once considered to be a good friend of my husband, it was hurtful to me to realize he has no understanding of what our life is now or that my husband is living on borrowed time. I sent him my husband’s phone number, suggesting he should give him a call…he has not. Sorry to vent to you, but I know that you, a complete stranger, gets where we are in life. Sending all my love on the wings of a desert sparrow, Deborah

Deborah, it’s so hard when you think you can count on someone and they let you down. Please feel free to vent here whenever you need. Venting is a much better strategy than growing bitter. With love, Dave

I’m so sorry to hear this Deborah, unfortunately that was some of my experience as a carer too. It is difficult not to be hurt or feel bitter, but I tried to remember that people’s absence and awkwardness said more about them than my mum, dad and I. On the whole, many people feel awkward as they don’t know what to say, they are scared and they feel confronted about their own mortality. Also, sometimes when you are caring for someone who is ill time seems to go so slowly, but our friends who are working and busy with life often forget how much time has passed since they last contacted you. WE had a very similar experience to you with your huband’s friend, except it was a close relative who then didn’t even come to my mum’s funeral – I still struggle to forgive her. I hope my experiences have helped me to become a more compassionate person to those in need, but I also know that I also don’t always do what I should!
Those that give you support are so precious and I’ve found that my relationship with those who supported me through my mum and dad’s final illnesses have deepened and are of immense value. I have a much closer relationship with my sister now than I ever had in the past which I appreciate so much, as it has in some way filled the gap I feel now mum has gone.
Take the opportunity to vent to those who will understand. And ask God to try to help you to forgive.
with love and compassion,
Sandra

I wish I had known about this book a year ago when my mom was diagnosed with cancer. I know it would’ve helped her and our entire family in many ways ! Even though my mom isn’t going to survive her battle with cancer, I’m going to buy a copy anyways. To be able to share it to someone in the future will make me feel like a million bucks!!